TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Caregiver’

TBI Tales . . . . . . . . . . . . . . . . . . This Song Could Be a Caregiver’s Anthem

This Song Could Be a Caregiver’s Anthem

by

Donna O’Donnell Figurski

David & Donna Aunt Irene's Funeral 060718

 

I happened to hear this old hit song (“Lean on Me”) a couple of days ago. After listening to the lyrics, I realized it reflects what we caregivers do. We just want to help.

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We don’t look this bad.

As the song implies, we give much-needed help. “Lean on Me” could be our anthem. Give it a listen.

PS. I just had to dance with this man to that song and we each did a bit of “leaning on.”

 

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

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(Clip Art compliments of Bing.)

 

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Caregivers SPEAK OUT! . . . Theresa Friedle . . . . . . . (caregiver for her husband, Scott)

Caregivers SPEAK OUT!

Theresa Friedle (caregiver for her husband, Scott)

presented by

Donna O’Donnell Figurski

 

Theresa Friedle & Husband Scott IMG_20161112_102405896.jpg

 

1. What is your name? (last name optional)

Theresa Friedle

2. Where do you live? (city and/or state and/or country) Email? (optional)

Tomahawk, Wisconsin, USA     theresaj4man@gmail.com

3. What is the brain-injury survivor’s relationship to you?

The survivor is my husband, Scott. At the time of the accident, Scott and I were engaged. We were married on June 3, 2017.

How old was the survivor when he/she had the brain injury?

The accident happened two days before Scott’s 47th birthday.

What caused your survivor’s brain injury?

We were both working as truck drivers. Scott was picking up a load of plywood, which needed to be tarped. Something happened when he was on top of the load spreading out the tarp, and he fell anywhere from thirteen to nineteen feet (depending on if he was standing upright). He landed on his head on a concrete floor.

4. On what date did you begin care for your brain-injury survivor?

Scott’s injury happened on October 27, 2016. It took me ten and a half hours to get to him. I’ve been at his side ever since then.

Were you the main caregiver?

At first, the doctors and nurses were Scott’s caregivers. When he was discharged from rehab on December 22, I became his main caregiver.

Are you now?

Yes

How old were you when you began care?

I was 46 years old.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

At home, I had a young adult daughter, who was expecting her first child, as well as my younger two children (older teenagers).

6. Were you employed at the time of your survivor’s brain injury?

Yes. I was working for the same company as my (now) husband. I had a permit for a commercial driver’s license.truck4

If so, were you able to continue working?

No. However, I was told about a program through my state called “Family Care.” I now get paid to take care of my husband.

7. Did you have any help? If so, what kind and for how long?

I learned a great deal from the doctors, nurses, and therapists who worked with Scott. I asked a LOT of questions. However, once Scott came home, other than my family pitching in with the chores – no. It’s my job.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

Immediately – while Scott was in the neuro intensive care unit.

Scott’s family lives quite a ways away, so, to facilitate keeping them informed of his progress, I started a Facebook page about him. It turned out to be a wonderful support system.

9. Was your survivor in a coma?

Yes. Scott was in a medically induced coma. He had a craniotomy (to allow his brain room to swell), he was intubated, and he had two ports (one for meds and the other for nutrition).

If so, what did you do during that time?

I stayed by Scott’s side – talked to him and sang to him. I prayed. I kept his family informed, etc.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? Theresa Friedle & Husband Scott IMG_20170705_220110

Yes. Scott was transported to an inpatient rehab facility closer to home. They provided him with occupational, speech, and physical therapies.

How long was the rehab?

We were there for twenty-two days. Scott continues to see speech and physical therapists twice a week.

Where were you when your survivor was getting therapy?

I stayed with Scott in the rehab center.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

When Scott was first home, he needed help with almost everything! He was still in a wheelchair, and he needed assistance toileting, dressing, bathing, and more. He now walks with a cane, needs occasional help toileting, can dress himself, can help cook meals, does simple crafts, etc. He can’t drive, so I also transport him to and from wherever he needs to go.

12. How has your life changed since you became a caregiver?

Our lives have changed dramatically. Everything we do revolves around Scott’s needs, doctor appointments, and outpatient physical and speech therapy appointments. We can no longer attend church services, and we cannot go anywhere where there will be loud, noisy crowds.

Is it better?

In some aspects, yes! I get to be home with my children, and I get to see my grandson more.ITheresa Friedle & Husband Scott & Grandkids MG_20170714_083217

Is it worse?

Yes. Scott is limited as to the things we can do, and we cannot drive a semi right now – if ever.

13. What do you miss the most from pre-brain-injury life?

I miss going to church and driving a semi. The semi meant super-long days and hard work strapping and tarping loads. Driving it was often scary with how some people drive around us. But, it was something I’ve wanted to do since I was a teenager!

13. What do you enjoy most in post-brain-injury life?

I love that I’m able to be home with my family! I love that I get to take care of Scott, who remains a super-loving wonderful man!

14. What do you like least about brain injury?

Scott’s constantly in pain.

15. Has anything helped you to accept your survivor’s brain injury?

AliveWhat has helped me most is being super-grateful that Scott’s ALIVE! I feel that, even if Scott stays how he is now, we still have a great deal to be thankful for.

16. Has your survivor’s injury affected your home life and relationships and, if so, how?

Of course it has! Every aspect of our life has changed. We had to move our bedroom to the dining room because Scott cannot climb up and down the fifteen stairs to the upper level. Our laundry room is currently being remodeled so that Scott will have a shower. Now, I have to give him sponge baths in the kitchen. My children are happier because we’re home most of the time now. Through the Facebook page I created, I was able to develop a relationship with Scott’s family. They are so warm, loving, and welcoming.

17. Has your social life been altered or changed and, if so, how?

We seldom eat at restaurants anymore. The busyness of them overwhelms Scott. We can’t go to church for the same reason. Social events are out. Friends can only stay for an hour or so, otherwise Scott’s exhausted. At this point, most of my social life is through Facebook. Honestly, we’re NOT dwelling on that!

18. What are your plans? What do you expect/hope to be doing ten years from now?

We’ve discussed a few options, but none that is viable at this point. Until we know how permanent various parts of Scott’s injuries are, we really cannot plan much of anything. We make tentative plans for a week or two at a time, knowing that we can only do them IF Scott is having a good day that day.

19. What advice would you offer other caregivers of brain-injury survivors?

Caregiver Tips -clipart-blackboard-helpful-tips-detailed-illustration-heplful-text-43676517This is a SUPER-hard job, as our emotions are involved!

Be gentle with yourself and super-patient with the PERSON you are caring for.

Join support-groups, even if you can’t physically attend a group. (I have found several through Facebook by entering “TBI support groups.” TBI=traumatic brain injury.)

Make sure you get the rest you need.

The hardest for me? ASK for help when you need it!

Celebrate each step forward. Little steps are STILL STEPS!

It’s going to be a very long road. Educate yourself about TBI.

Get involved with the therapists – you will get a better sense of what your loved one can and can’t do. (This helped me tremendously with selecting activities for Scott. I wanted to give him something that he CAN do – so he has a sense of ACCOMPLISHMENT. I praise his efforts, regardless of his success. I don’t live with Scott’s pain – but I can see how HARD various tasks are for him to do. When Scott is frustrated that he can’t do something that he used to do easily – Scott’s usually upset about household chores, etc. – I remind him that there is a HUGE difference between CAN’T and WON’T!)

Take notes when you go to various doctors. I have found that their records are often INCORRECT.

Life is very, very different than what we had envisioned, but “different” does NOT need to equate with “bad.”

Attitude is EVERYTHING!

It’s OK to cry.

It’s OK if all the chores aren’t completed every day. Your best IS good enough. Know that your best fluctuates every day – sometimes several times a day. One day you will be able to get everything that you want to do done! Woohoo! Another day, your best is simply getting out of bed!

YOU ARE NOT ALONE! 

20. Do you have any other comments that you would like to add?

Sometimes reading the answers to these questions sparks more questions. I would be happy to explain further.

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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New NEWS: My Radio Interview about My Upcoming Book

New NEWS: My Radio Interview about My Upcoming Book

presented by

Donna O’Donnell Figurski

Jamie Crane-Mauzy 053118

Jamie Crane-Mauzy

 

On May 27, 2018, Jamie Crane-Mauzy, a host on the Brain Injury Radio Network, interviewed me about my upcoming book (Prisoners without Bars: A Caregiver’s Tale), which will be available to the public on November 1, 2018, but that can be pre-ordered now. The 80-minute show has been archived and can be listened to at any time.

Donna O’Donnell Figurski

Prisoners

Prisoners without Bars: A Caregiver’s Tale

 

 

 

 

 

 

 

 

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it (intact) with your enemies. I don’t care!

Feel free to “Like” my post.

New NEWS: Preorder Prisoners without Bars: A Caregiver’s Tale

Prisoners without Bars: A Caregiver’s Tale

Did you know you can preorder your copy of my book, Prisoners without Bars: A Caregiver’s Tale?

You can! It’s easy.

You can order it in e-book form or paperback copy on Amazon.com or Barnes & Noble.com.

 

 

 

 

 

 

 

 

Just click the book cover or the title below.

Prisoners without Bars: A Caregiver’s Tale

Can’t wait for you to join our journey.

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it (intact) with your enemies. I don’t care!

Feel free to “Like” my post.

New NEWS: Countdown to Prisoners without Bars: A Caregiver’s Tale

Can’t wait for the release of my book, Prisoners without Bars: A Caregiver’s Tale

 

04.29.18

184 days to the release of Prisoners without Bars: A Caregiver’s Tale

4,440 hours to the release of Prisoners without Bars: A Caregiver’s Tale

266,400 minutes to the release of Prisoners without Bars: A Caregiver’s Tale

15,984,000 seconds to the release of Prisoners without Bars: A Caregiver’s Tale

But–WHO’S Counting?

Me! Me! Me! I am!

Check out my new website:  donnafigurski.com

 

Caregivers SPEAK OUT! . . . Heather Sivori Floyd . . . Caregiver for her son, TJ

 

 

Caregivers SPEAK OUT!

Heather Sivori Floyd (caregiver for her son, TJ)

presented by

Donna O’Donnell Figurski

 

Heather Sivori Floyd – caregiver mom to her son, TJ

1. What is your name? (last name optional)

Heather Sivori Floyd

2. Where do you live? (city and/or state and/or country) Email? (optional)

Oldham County, Kentucky, USA

3. What is the brain-injury survivor’s relationship to you?

He (TJ) is my son.

How old was the survivor when he/she had the brain injury?

TJ was 7 years old.

11 TJ Floyd

TJ – Brain Injury Survivor – bicycle accident

What caused your survivor’s brain injury?

TJ was riding his bicycle when he wrecked into the back of his brother. He flipped over the handle bars and hit his head on the concrete. He went to “sleep” and never woke up until days after his emergency open brain surgery.

4. On what date did you begin care for your brain-injury survivor?

April 21, 2010

Were you the main caregiver?

Yes

Are you now?

Yes

How old were you when you began care?

Age stinks. I’d rather not discuss it. LOL!

TJ and Mom Heather Sivori Floyd

TJ – Brain Injury Survivor & his Mom, Heather Sivori Floyd

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

Yes – my three other children. I was also pregnant at the time.

6. Were you employed at the time of your survivor’s brain injury?

Yes

If so, were you able to continue working?

Yes – part time from home.

7. Did you have any help? Mother-in-Law

My mother-in-law moved in to help with my other children so I could care full-time for TJ with his therapy and doctors.

If so, what kind and for how long?

Well, she is still here.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

Immediately

9. Was your survivor in a coma?

I’m not sure of the medical term, but he was unresponsive until several days after his brain surgery.

If so, what did you do during that time?

I slept beside TJ in a chair. I was three months pregnant and heartbroken at the fear of the unknown. What was it they called it? . . . Ah yes, “the new normal.” I was trying to figure out what that meant. You don’t actually “get it” until years later.

14 TJ & Mom Heather Sivori Floyd copy

TJ – Brain Injury Survivor & Mom, Heather Sivori Floyd

10. Did your survivor have rehab?

Yes

If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?

Physical, occupational, and speech therapies; also, hippotherapy (the use of horseback riding to improve balance, coordination, and strength)

How long was the rehab?

TJ still goes to therapy.

Where were you when your survivor was getting therapy?

With TJ

11. What problems or disabilities of your brain-injury survivor required your care, if any?

brain-injury-imageEverything. TJ’s brain bleed damaged the whole left side of his brain and parts of the right. He was left with severe impairments, specifically in speech, language, memory, and cognitive function. He has safety issues. Because of attention, safety, and balance issues, he has trouble walking without hands-on help constantly. He also has memory problems, speech problems, vision problems, physical issues from having hemiparesis (weakness on one side), and a lot more.

12. How has your life changed since you became a caregiver?

Things that mattered to me prior his accident are non-issues to me now. I often times feel I can talk with doctors and therapists better than I can with most people my age. It can be lonely, difficult, and frustrating at times to find common connectors in my personal relationships with friends and family. Some weeks are packed full of appointments. I’m drinking so much coffee I think my system will crash. Just this past week, I knocked out four appointments in one day. The most I’ve done in one day has been seven.

Is it better?

I would say yes – my life is better. Even though this is the most challenging task of my life, my son is innocent, happy, and laughs a lot. I believe having the privilege to care for my child, who is special needs, has been the most rewarding love one can experience. The impact special-needs children make are life-long. You learn so much through them in how they view the world.

Is it worse?

No parent ever wants this for his or her child. That being said, my life is better because of the profound true joy my son has brought me. The worst part, I would say, is having struggles that are hard to overcome. Watching him struggle is hard. I do whatever I can to help him when this happens. Also, the stress of future planning is scary and overwhelming.

18 TJ & Mom Heather Sivori Floyd copy

Heather Sivori Floyd & her son, TJ

13. What do you miss the most from pre-brain-injury life?

Our conversations. Most of the time, our conversations now are basic – food, eat, play a game, etc. I miss those conversations with my child that went beyond basic needs.

14. What do you enjoy most in post-brain-injury life?

Oh gosh, a child like TJ changes you in a profound way. The love you have in your heart for your child and others like him or her is something that is hard to put into words. I want to protect all of them forever. The world is full of evil people who would take advantage. I also enjoy trying to help others – to make it easier for the family who comes after us. There will always be another family. I’ve also learned to let the little things slide because, at the end of the day, they are just that – little.

15. What do you like least about brain injury?

Everything. It’s unrelenting and nasty. It takes a lot and rarely gives anything back.

16. Has anything helped you to accept your survivor’s brain injury?

Yes – TJ is happy. It is hard to justify my being sad or my crying all the time when he is happy. He lives in the now – not for tomorrow or the day before.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

1-divided-path-tracie-kiernanYes – especially my personal friendships and my relationships with family. I think we are on different paths in life now. While they talk of work and social events, I am constantly thinking What can we do to make it better for TJ and others going through this? My closest friends are now the caregivers and survivors I’ve met locally. We work together locally to make a positive change for the brain-injury community. I also work with an amazing team of ladies who help me run two support-groups for survivors and caregivers. I started my first one seven years ago. I was scared after TJ’s brain injury, and I needed to know I was not alone. I needed hope. The groups grew to over 30,000, and the rest is history. The friendship we have is unbreakable. Shout-out to my amazing admins and friends: Melissa, Shauna, Margie, Mary, Michael, Eddie, and Alex. Love you all! We’ve met many who have inspired us in this journey.

18. Has your social life been altered or changed and, if so, how?

Um, what social life?! Seriously, I have no social life. It’s too hard to connect with others.

19. What are your plans?

My #1 plan is finding the best long-term situation for TJ that will ensure the best care he can have when we can no longer do so. Personally, I also plan to continue making a difference locally. We have several projects we are working on, and I have some more ideas to help. I ALWAYS have an idea. I’m always thinking big. Nothing brings me greater joy than helping others. It is important for families to know they aren’t alone and that people care enough to try and make it better. I try to do my part because of my son and the many we have met.

What do you expect/hope to be doing ten years from now?

I hope to still be laughing and loving the small joys in life with TJ. Hopefully, we will have made a big impact locally and beyond for the brain-injury community.

20. What advice would you offer other caregivers of brain-injury survivors? Never Give Up

Never give up. Let the small things go. Love deeply, and give your all. If you don’t, one day you will wish you had. Be the voice for your loved one. Never let “no” be an obstacle; there is always a way. If the door closes, kick it open. Most importantly, hang on when the days are hard and you feel you cannot go on. You can, and your survivor needs you to. Connect with other caregivers so you don’t feel like you walk this path alone – because you don’t. There are many who walk it with you daily

Do you have any other comments that you would like to add?

I think I’ve said what’s important for caregivers to know.

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. I don’t care!

Feel free to “Like” my post.

Caregivers SPEAK OUT! . . . Pattie Welek Hall . . . . . . . . (caregiver for her son)

Caregivers SPEAK OUT!

Pattie Welek Hall  (caregiver for her son)

presented by

Donna O’Donnell Figurski

 

Pattie Welek-Hall 3

Pattie Welek Hall (caregiver for son) Author of “A Mother’s Dance”

 

1. What is your name? (last name optional)

Pattie Welek Hall

2. Where do you live? (city and/or state and/or country) Email? (optional)

Summerville, South Carolina, USA     pattie@pattiewelekhall.com

3. What is the brain-injury survivor’s relationship to you?

He’s my son.

How old was the survivor when he/she had the brain injury?

19 years old

What caused your survivor’s brain injury?

Motorcycle accident

4. On what date did you begin care for your brain-injury survivor? 

MotorcycleOctober 6, 2002

Were you the main caregiver?

Yes

Are you now?

We live in different states now, but I’d have to say that emotionally I am his main caregiver.

How old were you when you began care?

56

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

I was in the process of finalizing a divorce and also raising my other two children, Annie (freshman in college) and Bo (junior in college).

6. Were you employed at the time of your survivor’s brain injury?

th

Yes – at Barnes & Noble in Charlotte, North Carolina

If so, were you able to continue working?

No. Mid-October, I was scheduled to step into new position – Community Relations Manager at Barnes & Noble in Huntersville, North Carolina. The manager held my position until I was able to return.

7. Did you have any help?

Yes

If so, what kind and for how long?

When Casey returned home, he went to outpatient care in Charlotte, North Carolina. At that time, his dad’s insurance paid for a driver to take and pick him up from rehab so I could return to work. Casey remained in rehab until April 2003.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

For the first eleven days after my son’s accident, I slept on the floor in the ICU (Intensive Care Unit) at the Medical University of South Carolina, and then I moved to Marriott Courtyard for the remaining days of his six-week stay.

A Mother's Dance

“A Mother’s Dance’ by Pattie Welek Hall

9Was your survivor in a coma?

Yes. Twice.

If so, what did you do during that time?

I prayed out loud to him; I talked to him; I relayed how his day unfolded (Guess who visited; I recounted what they said) . . . and I told him stories.

10. Did your survivor have rehab?

Yes

If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?

Outpatient—speech, occupational, and physical

How long was the rehab? kc8oAg59i

Five months

Where were you when your survivor was getting therapy?

At work

11. What problems or disabilities of your brain-injury survivor required your care, if any?

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

13. What do you miss the most from pre-brain-injury life?

I miss my boy’s easy-going nature.

14. What do you enjoy most in post-brain-injury life?

Pattie Welek Hall

Pattie Welek Hall (caregiver of son) Author of “A Mother’s Dance”

That my son is alive

15. What do you like least about brain injury?

That my son has frontal lobe damage which affects those he loves

16. Has anything helped you to accept your survivor’s brain injury?

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Relationships are up and down – mostly due to frontal lobe damage.

18. Has your social life been altered or changed and, if so, how?

19. What are your plans? What do you expect/hope to be doing ten years from now?

I hope that my son’s life is filled with love, laughter, and peace.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. I don’t care!

Feel free to “Like” my post.

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